Bottle Drive Fundraiser

Hi All, Well it's that time of year again, where the recyclables are piling up for the holidays. We have an account at the Bottle Depot on Quadra Street and Alpine in Langford (Sunday - Friday's if possible). If you bring the recyclables to the depot just let them know that you would like to have some or all of the deposit refund applied to the Milne SJS Society account. Recyclable donations will be accepted up to and including January 31, 2010.

Ian is already scheduled for his lens refit in Boston in July 2010 and we are gearing up for reconstructive surgery of his eyelids but don't have a date yet. However, we do know that the cost will be high, so we are starting our 2010 fundraising with gusto!. Please pass this on to all of your contacts, church members, friends, family, work colleagues or organisations who may want to donate bottles or cans from christmas parties or office bottle drives. If you need a flyer just email me at milnesjs@shaw.ca and I will happily forward it to you. For more information visit www.milnesjs.com

Thank you as always, I don't know what we would do without your ongoing support. A healthy, happy and prosperous holiday season and New Year to you all.

Hot Dog Sale

Well the weather was not very cooperative for our hot dog sale at the weekend. However, it was still a successful event. We managed to hand out over 200 Stevens Johnson Syndrome Fact sheets. Bottom line: we need more people to know about SJS

www.milnesjs.com

SJS goes to the White House

DENVER Coloradoan November 16 2009 -

Michelle Obama encouraged 80 Denver-area high school girls Monday to not only seek mentors, but to fill that role themselves. Julie McCawley is already living that message.

McCawley, a Westminster High School junior who shared a table with the first lady at a Governor's Mansion luncheon, is visually impaired because of an adverse drug reaction as an infant. She now has a foundation that aims to educate people about adverse drug reactions and a condition known as Stevens Johnson Syndrome.

"She was amazed by it," McCawley said of her discussion with Obama about her work. "She had never heard of something like this before, and she asked if she could keep the fact sheet."

Congratulations Julie - You have taken SJS awareness to a whole new level. For pictures and information about the event Read the full article

Vaccinations

There has been quite a stir lately as to whether or not we should vaccinate against H1N1, but for many SJS survivors the issue is particularly hard, because another SJS reaction to any of the ingredients cannot be predicted...........as such we have chosen not to give the vaccine to Ian because when we consider the "RARE" adverse reactions, that word "RARE" means nothing to us.

I've been reading the many articles doing the web rounds every day but the video below is easy to understand and just makes sense to me generally. If you prefer to read the article visit:

http://articles.mercola.com/sites/articles/archive/2009/11/14/Expert-Pediatrician-Exposes-Vaccine-Myths.aspx

Remembering all who fought for our freedom. Thinking also of the many soliders who had SJS / TEN from drugs used during treatment of their injuries.

For more information about SJS / TEN www.milnesjs.com

BBQ Fundraiser

Busy preparing for our upcoming "Hot Dog BBQ" outside the Langford Walmart on Saturday November 28 2009 from 11 a.m. - 4.00 p.m. If you live in the Colwood / Langford area, we need volunteers to help with setup, cooking, sales and teardown. Donations are urgently needed at this time. For more information visit:

www.milnesjs.com

Ongoing scleral lens challenges..

We are all totally frazzled since coming home from Boston, hence the lack of postings. I kid you not when I say that I have been removing / inserting that lens nearly every 30 minutes since October 17. It does not sound bad but it interferes with everything.

The issue is not the lens, because in reality it's a piece of plastic that cannot change. The issue is obviously Ian's eye. Friday 6th @ 7pm the courier arrived with a new lens, but the eye was too inflammed to try it so we waited until yesterday. Fine in the morning, but problems in the afternoon. Ian was devastated - almost the last straw as he had convinced himself that everything would be fine. Last night however, things went really well and so far this morning the lens has been in for an nearly two hours now and no problems yet. Keeping our fingers crossed.

For more information visit www.milnesjs.com

Off to Boston

Tomorrow we leave at 4.30am for our flight to Boston. The actual travel is so stressful and Ian has been begging me all day not to go. He hates the journey and it is so hard on his eyes as the air in the cabin is so dry. His eyes are usually swollen for two days afterwards.

Hoping I can cheer up by tomorrow to keep him motivated......Don't know how much longer I can keep going with this reactive, crazy, schedule of eyedrops, school, appointments and travel. SJS Sucks!

www.milnesjs.com

In Memory of Judith Cronmiller

Judith Matthews Cronmiller, 64, of East Lansdowne, a registered nurse, died Saturday (26th Sept) of complications from Stevens-Johnson syndrome, a skin disease, at Crozer-Chester Medical Center in Upland. Our hearts, prayers and condolences go out to Judith's family.

This is why we have to keep spreading the word. Every day we hear of new patients and quite frankly enough is enough! We have just set up a cause on Facebook so if you are on Facebook, then please take the time to become a member:

Support the Milne Stevens Johnson Syndrome Society.

Our short time goal right now is to send Ian Milne (11 yrs) to Boston, Oct 2009, for urgent refitting of his Ocular Surface Prosthetic Lens. This device is crucial for pain control / maintaining vision. Donations can be made at: www.milnesjs.com

Our overall mission however, is to inform as many people as possible about this horrific condition so that no one else dies or has to live the life that these survivors endure. Please support us now and join our cause.

Heading to Boston

Ian is heading to Boston on October 4, 2009 for emergency refitting of his scleral prosthetic lens. This device is essential for pain relief and maintaining vision. Donations are urgently needed at this time to help with costs. For more information please visit the Milne Stevens Johnson Syndrome Society at:

www.milnesjs.com

Cornea made from Tooth

Implanted tooth helps blind US woman recover sight

Osteo Odonto Keratoprosthesis

A 60-year-old US grandmother, blind for nearly a decade, has recovered her sight after surgeons implanted a tooth in her eye as a base to hold a tiny plastic lens, her doctors said Wednesday.

Sharron "Kay" Thornton, from the southern US state of Mississippi, lost her sight in 2000 when she came down with a case of Stevens-Johnson syndrome, a rare disease that scarred her cornea, according to the University of Miami's Bascom Palmer Eye Institute.

For patients whose bodies reject a transplanted or artificial cornea, this procedure "implants the patient's tooth in the eye to anchor a prosthetic lens and restore vision," said Thornton's surgeon Victor Perez.

In the procedure -- which was pioneered in Italy but was a first in the United States -- the medical team extracted Thornton's canine or "eyetooth" and surrounding bone, shaved and sculpted it, and drilled a hole into it to insert an optical cylinder lens.

The tooth and the lens are implanted under the patient's skin in the cheek or shoulder for two months so they can bond, then they are carefully implanted in the center of the eye after a series of procedures to prepare the socket.

"A hole is made in the mucosa for the prosthetic lens, which protrudes slightly from the eye and enables light to re-enter the eye allowing the patient to see once again," read an Eye Institute statement.

Following a series of operations, medical personnel removed the bandages from Thornton's eyes two weeks ago.

She was able to recognize objects and faces a few hours later, and 15 days later she was able to read newspapers, the Eye Institute said.

"I'm looking forward to seeing my seven youngest grandchildren for the first time," said Thornton.

I'm actually surprised that this procedure has not been performed in USA prior to this as it has been available in many countries for a couple of years now. Even had one lady in Ireland who had successful results. Have a look at this video of a Stevens Johnson Syndrome Patient from England:

http://www.YouTube.com/watch?v=L4vE7QlbVak

Nominate SJS Foundation

Please nominate The Stevens Johnson Syndrome Foundation (Westminster, Colorado) for the Christies Cookie Charity Giveaway. The most nominated charity will receive a check for $10,000. The runner-up wins $5,000, and the next 10 will receive $1,000 each. http://ilovechristiecookies.com/contest/form.asp

www.milnesjs.com

Acupuncture for Dry Eye Photos

This boy is my hero - not quite sure if I could
have this done while awake.

Third Session

Remembering September 11.

Thoughts to everyone touched by the tragedy of 9/11. I'm reaching out today to any survivors who experienced SJS cases due medications received as part of their treatment.

www.milnesjs.com

Acupuncture for dry eye

3rd Acupuncture session today. I'm in awe of Ian with needles in his eyelids. No progress yet. We'll see how today goes.

www.milnesjs.com

Accupuncture for dry eye

Ian had acupuncture this week. 12 needles in/around his eyes and 8 around his body. What an incredible 11 year old boy. I forgot to bring my camera, but he has another appointment next week so I will try to post some photo's after the next session. Ian really is my hero!

No results yet but I will keep you up to date.

www.milnesjs.com

Back to School

Well it's getting close to that time of year where our SJS kids must return to that annual germ fest known as school. Given Ian's SJS episode last week, I am especially concerned about hygiene in the class and the propensity for illness that it poses. So if you are a parent, regardless of where you live in the world, PLEASE do not send your kids to school if they are sick, especially with the H1N1 virus in our midst. Now is the time to re-train students about the importance of frequent hand washing. SJS does not discriminate and the simplest most effective way to prevent it happening to our children, is to stop the spread of viral or bacterial infection thereby limiting the need for drugs that cause SJS.

www.milnesjs.com

Ian's eyes

Very depressed today. Ian had been complaining for the last few weeks that the vision in his right eye is not as good as it had been after his cataract surgery. His ophthalmology exam today showed more blood vessels growing into the cornea which causes cloudiness or blurriness. This photo is not of Ian's eye, but demonstrates corneal neovascularization perfectly.

Follow up appointment in 6 weeks to determine if the vessels are advancing further into the cornea. Too scary to contemplate the loss of vision right now! On a happier note though, we are making progress with the serum drops and Ian's ophthalmologist will contact the hospital in Vancouver to have the blood drawn and spun.

For more information about Ian and Stevens Johnson Syndrome please visit:

www.milnesjs.com

Spent some time this weekend talking to the families of people who died from SJS/TEN. Puts everything into perspective and helps me to realize just how lucky Ian is to have survived. Makes me angry though, that not only were those deaths senseless, they were an unnecessary endurance of the most agonizing form of death imaginable. You cannot imagine that something so horrible even exists from taking medications as directed.

For information about SJS visit www.milnesjs.com

SJS Awareness

Great Clip from Julie McCawley.

For more information visit www.milnesjs.com or www.sjsupport.org

Serum drops in Canada

WOW - A huge thanks to a fellow SJS patient in Vancouver who read my previous post regarding the Autologous Serum Eye drops. They've been having them made in Vancouver the whole time that we have been chasing our tails down to Miami.

I'll call Ian's doctor on Monday and have her follow up, so here's hoping. As soon as we have everything arranged, I'll let you know how it goes.

To contact us or for more information about SJS visit:

www.milnesjs.com

Autologous serum eye drops

Here is my wish list for the day: To get someone on the phone who cares enough to help rather than "passing you on"

The best eye drops to use for dry eye, are autologous serum eye drops. These are eye drops made from the patients own blood and contain all the proteins, nutrients and antibodies of natural tears. Up to now we have been travelling to Miami to have them made so this makes them ridiculously expensive with the cost of flights, hotels etc. Recently I found a Canadian medical article about the drops and I thought this was perfect, because now we could simply have them made locally. I contacted the author of the article, who was very helpful, but since then I have been on this "merry-go-round" of phone calls, constantly being passed from one person to the other. I think I have spent over 20 hours for the answer to one simple question. This is the side of a "'rare" disorder that no-one sees, the hours and hours of red tape and bureaucracy for every little thing - it makes things so unnecessarily stressful. The worst part is that I usually end up being passed back to the the people I called in the first place. If you would like to read the Canadian article, you can find it at:

http://article.pubs.nrc-cnrc.gc.ca/RPAS/rpv?hm=HInit&calyLang=eng&journal=cjo&volume=44&afpf=i09-015.pdf

SJS Awareness

August is SJS Awareness Month

www.MilneSJS.com

Please spread the word by sharing our website

Surviving SJS

For those who survive SJS, there are serious and permanent complications:

• Stricture of the Esophagus
• Asthma or C.O.P.D.
• Chronic Fatigue
• Arthritis
• Environmental and Food Allergy
• Permanent Scarring of the Skin
• Difficulty with Regulating Body Temperature as the pores are scarred shut causing overheating
• Ocular Surface Disease and Dry Eye leading to blindness
• Cardiac Diseases such as Myocarditis

Without doubt the permanent damage to the eyes and supportive ocular tissue is the most medically challenging complication. Severe dry eye, scarring of the cornea and numerous other ocular surface diseases are common. Frequently the eyelids become permanently grafted onto the eyeball as the "burnt" inner eyelids heal, preventing movement of the eye or closure of the eyelids.

The formation of hard, scaly, scar tissue inside the eyelids induces intense friction on the eye, causing blood vessels to grow into the cornea. As the cornea becomes thinner, excruciating ulcers develop leaving permanent scar tissue. Loss of stem cells cause the cornea to become opaque, inflammation causes cataract and diseases of the conjunctiva are progressive. Blindness can be caused by any of these eye conditions individually, but collectively they are viewed by ophthalmologists as THE MOST TORTUOUS grouping of ocular conditions and survivors endure agonizing pain, seeking darkness and hiding from light of any kind.

To read Ian's story or for more information please visit

www.milnesjs.com


For quick updates follow our tweets

www.twitter.com/MilneSJS

What is SJS

Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are potentially fatal adverse reactions to medications such as antibiotics, anti-convulsants, anti-depressants and anti-inflammatory drugs (prescription and non prescription such as ibuprofen). Cocaine has recently been added to the list of causative agents and there have been reported cases related to herbal supplements containing ginseng. In rare cases the syndrome can be caused by infection or cancer.

SJS patients have severe blistering of the skin and mucus membranes including the mouth, eyes and genitals. When the involvement of the body is greater than 30% the classification is changed to TEN which literally means “toxic skin death”. The blisters progress so that “sheets” of skin are lost from large areas of the body. Huge amounts of fluids and salts seep from the raw, exposed tissues. It’s important to emphasize that the loss of skin externally, referred to as sloughing, is matched internally by shedding of the lining of mucosal membranes such as the mouth, throat, lungs and gastrointestinal tract. Both stages of involvement are life threatening.

To read Ian's story or for more information please visit

www.milnesjs.com


For quick updates follow our tweets at

www.twitter.com/MilneSJS

About Us

Founded in April 2008, the Milne Stevens Johnson Society is a registered non-profit organization based in Victoria, B.C. Canada. Our mission is to help 11 year old Ian Milne to preserve his vision, by facilitating ongoing access to state of the art medical treatment. This will involve a stringent adherence to treatment schedules and recommended protocols, including bi-annual travel to specialists in the United States.

We recognize that knowledge is power, and as such, strive to build awareness and provide information or support to Stevens Johnson Syndrome patients and their families worldwide.

But we can't do it without a helping hand. We're a grass roots organization, so join us as we make our journey with Ian to happy, healthy eyes. If the past 8 years are anything to go by, we'll have highs, lows, obstacles and frustration (not to mention exhaustion). But be assured, that no matter how long it takes, there will be victory, clear vision and tears of joy!

For indepth information or to contact us, please visit

www.milnesjs.com

For quick updates follow our tweets

www.twitter.com/MilneSJS